2011

I’m the sort of person who remembers dates, especially year anniversaries of dates. I remember the date of my high school graduation, the date of my first date with Ryan, and the date I found out I was pregnant with Grayson.

One year ago today, December 30, 2010, is a date I will always remember. One year ago today my life and my family’s future changed significantly, although we had no idea at the time how significantly.

Grayson was 3 months old and had his first cold. He was coughing and congested, so I took him to the doctor. It was, of course, right before New Years and I wanted to make sure everything checked out before the holiday. He was given a prescription for his inhaler and we were told to use the bulb syringe, humidifier and saline drops until it cleared up.

Right as Dr. D and I were wrapping up our conversation, I hesitated, debating whether or not to even say anything. I remember my exact words.

“I know I’m probably being a paranoid new mom, but I wanted to ask you about a few things.”

I went on to tell her I’d noticed that Grayson wasn’t tracking with his eyes, that I sometimes noticed some strange movements of his eyes, and he had only about a week before started smiling.

Well, it turns out I wasn’t being a paranoid new mom. Not at all. In the last 365 days I’ve gone from being a new mom just trying to adjust to having a typical newborn to adjusting to life with a special needs kid with a list of symptoms and a team of doctors larger than I can count on both hands.

December 30, 2010. I was 3 months into my flight to Italy when the flight attendant softly whispered that the plane was being rerouted to Holland*, a beautiful country with tulips and little boys in wooden shoes.

My 2011, my new life, started a year ago today. 2011 has definitely been the hardest year of my life, but also the best. I’ve never been more tired, scared, and uncertain of the future, but I’ve also never felt more loved. I’ve watched my baby boy struggle to meet physical milestones and battle serious health issues, but I’ve also watched him learn to laugh, give kisses, and melt hearts wherever he goes.

I enter into 2012 with great uncertainty, but also great hope and anticipation. I pray that 2012 will be a year of clarity, but it could leave questions unanswered, and may bring a crop of new questions. What exactly is going on in Grayson’s little body? What does his future hold? Will he ever walk? Will we be able to have more children? are all questions I hope to have answered in 2012.

I’m not making any resolutions this year. 2011 taught me life happens the way it happens despite other plans. But I will live 2012 so that I have no regrets a year from now. I will love my family, laugh with my friends, and celebrate Grayson for what he can do, not what he can’t. I will continue to fight for my son so that he has the best care possible, and try not to worry too much about medical bills and other things I can’t control.

Despite everything, it’s been a good year. The best year.

*You can read about Holland and Italy here.

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Deja Puke

We’ve had a rough few days around here.

Last Thursday, Ryan got strep. Grayson and I avoided him as much as possible, but knew the chances of us not getting sick were pretty slim. Friday, I took Grayson to the doctor because he had the beginnings of a cold and cough, and I wanted to make sure he didn’t have strep. He didn’t, but was wheezing and his throat was red. We were told to use his inhaler and bring him back if it got worse.

Well, it’s definitely gotten worse. Yesterday, I found out I have strep, and I’ve been sicker the last two days than I have in a long time. I’ve these two days in bed/on the couch- thank goodness for my husband and mom who have taken care of Grayson, who has progressively gotten worse and worse. Oh and thank goodness for NyQuil, which makes me babble like a lunatic in a semi-conscious state, but gave me sweet relief from my burning throat and aching body.

Grayson is puking nonstop again. We think a lot of it is his cough- he coughs and it forces everything up. We’ve changed his clothes the past few days more times than I can count (which is even more annoying than a typical clothes change because of the tube) and I’m having flashbacks of October, when his vomiting became so bad we ended up in the hospital for 10 days.

Ryan took G back to the doctor this afternoon. He has an ear infection and bad chest cold. He got a breathing treatment during the visit, and Dr. D wants us to do his inhaler diligently every 4 hours. If his cough isn’t better by Saturday, she wants to do a chest X-ray. I’m frustrated because she didn’t have much to say about the vomiting, even though he had thrown up 6 times today before going in. And then on the way home, he threw up all over himself and his car seat, and then once more before we put him to bed.

I’m going to call his GI doctor in the morning, to see if he has any suggestions. We saw him on Tuesday, but the vomiting hadn’t really started yet. Update on that: once G gets over this hurdle, we are going to slowly start him on bolus feeds (more volume at once instead of continuous) and hopefully work our way to 4 bolus feeds during the day and then continuous feeds at night. We scheduled his procedure to get his G-button for January 26.

That afternoon, we met with the surgeon who will be doing the muscle biopsy. She does NOT want Grayson to be under anesthesia for both the button procedure and biopsy. The problem is the GI doc is with a different hospital system than the biopsy surgeon. So the surgeon wants to do the button herself while he’s under anesthesia anyway, and also do his ABR hearing test that we’ve had to cancel twice. So if it works out, we’ll be killing three birds with one stone. No word yet if our GI doc will be on board with this though.

But in the meantime, we’re just surviving around here. I hate that I’ve been so sick and unable to really be there for Grayson while he’s so sick too. I hope we can all get some sleep tonight- even though we’ll be up at 10:00 and 2:00 with G doing inhaler and meds- ugh!!!

Santa

Grayson received this letter on Christmas morning. He sure is blessed to have such a wonderful, loving grandfather Santa.

(You can read last year’s letter here.)

Dear Grayson,

Well, here I am again. Remember last year when I told you I added you to my list? Once on my list, always on my list. You can count on that.

I know you have not had much to celebrate this past year. Doctor appointments, trips to the emergency room, tubes down your nose, a hole in your stomach- not a whole lot there to remember with pleasure. But here I am on your roof again. You can count on that.

Which is the reason that everybody is celebrating now- something to count on. Many years ago a prophet named Isaiah said, “The people walking in darkness have seen a great light.” You see, back then there was also a lot of unpleasant stuff. The darkness of sickness, pain and disappointment has always tried to overcome us. Back then, however, there was no reason to believe that we had any choice to give in. One can not see very far in the dark.

But the God who loves us stepped in with-get this-a special child. I know the term is one that you and your mom and dad wish would go away, but the reason that you and I and everyone else are able to know more than darkness is because on that first Christmas we learned what special really means- God among us. He took all that sickness, pain and disappointment on himself and showed us all that the life he has given us is abundant, eternal and above all else, something we can count on. From that single light many years ago come all the lights you see today, all the songs, all the good wishes, and even a fat man in a red suit.

Your family is celebrating today because they too know that God is among us. they know it especially well this year because even as weariness and tubes came in and out, so did God’s promises and new strengths. Light always defeats darkness. You can count on that.

A man that visits every house in the world in a single evening also counts on nourishment, as do his reindeer (who also say hi). Thanks for the cookies and carrots and waffles. I especially like visiting a house where gaining weight is a good thing!

Enjoy this day with your family and continue to bring out the best in them. I will have my elves keep an eye on you and will be back myself next year. You can count on that.

Love,

Santa

15 Months

Dear Grayson,

Happy 15 months little man! Once again, it’s been quite a whirlwind month. Besides your surgery and new-and-improved G-tube, the biggest happening this month is you are GROWING! You got a ton of 12 month clothes for your birthday that looked enormous at the time, but now they are all getting snug and the pants too short! I’m not sure of your exact weight, but I know it’s somewhere between 19 and 20 pounds.

I pick you up each morning out of your crib and you feel heavy. Since you aren’t sitting up on your own, we bathe you in the infant tub still, but you are like a fish that is too big for his tank- we are going to have to figure something else out soon.

Something else that is growing- your hair. Didn’t we just get it cut? I am trying to convince Daddy that it’s time for another trim, but he is being stubborn about it. But he’s not the one who has to do something with this bed-head every morning!

This month, you have discovered it’s fun to stick out your tongue. Anytime something really makes you happy or excites you, you stick out your tongue and get a mischievous look in your eyes. It’s so super cute.

You also LOVE to brush your teeth. We got you an electric toothbrush hoping to stimulate your mouth so you want to eat (no such luck) but you love to hold it and move it around in your mouth.

I told you you’re outgrowing your clothes!

Overall, you are doing really well. You’ve got such a sweet personality, love to give kisses, work so hard, and are getting stronger and learning new things every day. I really can’t believe you are about to celebrate your second Christmas in a few days.

Happy 15 Months and Merry Christmas sweet little Monster. You know how much I love and adore you.

Love,
Mommy



I’m Legal Again!

Today, I finally got my driver’s licence renewed, two months after it expired. To celebrate, I had this for dinner…

How cute is that mini bottle of champagne? Ryan bought a four-pack for me a few weeks ago, and surviving the DPS seemed good enough reason as any to make a little 6 pm mimosa. And I am convinced that the DPS exists solely to show sane, rational people that there is another way. This is evidenced by the large sign that read: “Numbers are not called in numerical order or in the order of arrival. If you don’t come immediately when your number is called, you lose your turn!” Talk about anxiety. I’m waiting for #61 to be called but hearing, “#2043 it is now your turn…#3 it is now your turn…#105 it is now your turn.” Finally, #61 was called and I made my way to the counter and the clerk who had definitely not gotten the memo that ’tis the season of merriment and good cheer.

I am depressed about my new picture. My old picture was decent- this new one, not so much. And mixed blessing- this one doesn’t expire until 2017. So I’m stuck with this horrible picture for at least the next 5 years (hopefully 10, if I get to renew online next time). And then I texted one of my besties afterwards about this and she gloated sweetly informed me that she got to renew hers online, so she gets to keep the pre-babies, 22-year old version of her picture.

So back to my husband, who does sweet things like buying me mini-champagne bottles and taking me to lunch after leaving the Twilight Zone, we had this gem of a conversation after dropping off the kiddo at my parents’ house and making the trip out to Rosenberg (a good 5 times the distance of the closer DPS office, but totally worth only waiting 1 hour instead of 4):

Me: I am so glad we get a little break this morning

Ryan: Yeah, G-Man is a lot of work. I don’t know how you do it day after day, all day long.

Me: Yes, but then when I’m not with him, I really, really miss him. I wish I could just hold him right now.

Ryan: Well, it’s because you are so used to having him with you all the time. It’s like underwear. If you left the house without it, you would feel weird, like something is missing.

Me: Hmmmm.

So evidently, Grayson=underwear. Can’t leave home without it.

Gotta love that guy.

And in case you were wondering, Grayson is doing fine, considering he already needs another haircut and has a hole in his stomach.

But his life is obviously exponentially more secure now that his driver is legal again.

A Few of My Favorite Things

‘Tis the Season. We’ve had quite a bit going on lately, and especially this year, I am really trying to focus on making Christmas about family, friends, giving to others, and celebrating the birth of Jesus. I am avoiding the mall at all costs, and am really hoping that presents and “stuff” remain at the bottom of my priority list next Sunday. This December, I do have some Christmas things that I am loving- a hodgepodge, really- some from my own life, some links others have shared or blog posts I have read. Enjoy!

  • A friend of mine posted this video on FB and I just love it. It says exactly what I want my Christmas to be.

Simple Christmas @WoodsEdge from WoodsEdgeMedia on Vimeo.

  • Christmas Cards. I absolutely love getting mail in December and receiving everyone’s bright cards with pictures their cute kids and pets. I also love sending out cards of my own- this year, we took family pictures at Waggin’ Tails and they turned out so well I decided to use several of them for our card. Although Grayson still had his NG tube at the time, I think it shows our “real” life and where we are right now. The Baker family 2011 card:

  •  This blog post. These days sometimes I feel like I’m in a stable too.

  • This song. It’s just beautiful.
  • Goodwill Towards Men. I’ve mentioned it before, but I am so grateful for the kindness and generosity shown to our family these past few months. So many people are so incredibly good.

  • Christmas Cookies. Ok, so I haven’t actually made any cookies this year, but how cute is G-Man tasting his first cookie dough during therapy on Friday? He loved it!

  • LIGHTS! Grayson loves lights and anything shiny, so he is all about Christmas decorations and lights. In therapy, we are working on cause and effect- we are borrowing a machine that hooks up to Christmas lights and when he pushes a button, the lights come on. It’s been really neat to watch him figure out how it works. He gets so proud of himself when he turns on those lights.
Ready…

Set…

Go!
  • And, last, for a good laugh, watch this:

Merry Christmas Friends! I hope this coming week brings you peace and joy and minimal holiday stress!

Recovering

I’m sure most of you already know, but Grayson’s surgery went perfectly and we are at home recovering. Yes, both of us- I am so, so tired. Monday afternoon/evening were rough- he was really sore and irritable coming out of anesthesia. He had two doses of Morphine for pain which (thankfully, I’ll admit) knocked him out and he slept through the night Monday. We started tube feedings about 9 am yesterday and so far no there have been no issues.

And let me just say…

I’m totally in love. And yes, I know love is blind and in a few days or weeks my infatuation will fade and I’ll have a laundry list of annoyances with this tube. But for now, I’m in feeding tube heaven.
Ya’ll, seriously. No more blowing air into the tube and listening to his stomach with a stethoscope, no more checking the pH, no more worrying about him pulling it out (of his nose, I guess I still have to worry about him pulling it out of his tummy), and no more nasty, snotty, food-crusted tape on his face. And I can kiss these sweet cheeks again…it’s great.
My only complaint right now is I don’t know how I’m going to give G his medicine through the tube at night. The port where we give the medicine through syringe is just a few inches from where the tube comes out of his tummy. We’re putting him in onesies under his clothes/jammies so he doesn’t grab at it, and the rest of the tube is threaded down his leg and through his pants by his foot. And he sleeps on his tummy. So in order to give him meds at night while he’s sleeping like we’ve been doing, I would have to flip him over, take his pants off, and unbutton his onesie. There’s no way I can do that without waking him up, which I absolutely do not want to do. So I’ve put in a call to the doctor to see if we can shorten the time between doses so that he gets all of his meds during the day. We’ll see.
Today has been a low key, lazy, and actually boring day. We had vision therapy this morning and Grayson painted a Christmas tree. He was doing great until I picked him up to clean his hands and it hurt his tummy, and he was DONE with therapy after that. Good thing the swing still soothes him- I have no idea what we are going to do once he reaches the 25 pound limit on that thing. I’m mourning the fact that we can no longer put him in the Fisher Price Rock and Play (my favorite baby item ever)- I know, I know, it’s for newborns, but when your kid can’t sit up on their own, it’s nice to have somewhere to sit him in a pinch.
Painting is serious business
Anyway, that’s about all for my update. A lot of people have asked how long he will have to have the G-tube. He will have this tube (called a PEG), which sticks out a few inches from his belly, for about 6 weeks and then will get a button which will be right at his skin and it can just be uncapped to stick the tube in, or a syringe. But the short answer as to how long he will have it is- we have no idea. It all depends on Grayson and how well 1. he learns to eat enough food by mouth to grow and be healthy and 2. his GI system handles food in larger quantities at once (right now he’s getting 35 mL- just over an ounce- per hour, 22 hours/day).
But if he has the tube 1 year, 10 years, or the rest of his life, all that matters is he’s being fed.